When Time Runs Out...
by Catherine J. Rippee-Hanson
Aging parents of adult children with a serious brain illness often have spent their lives caring for their sick children - especially when no other options are available through community resources or they have been hindered by laws that work against families. And for the most part, many parents have done a good job given the broken system they must navigate or even circumvent, but time does not standstill. The clock is always ticking, as all these parents are acutely aware. Time marches onward... What happens when time runs out?
For families with a loved one affected by a serious brain disorder, formerly referred by many caregivers and advocates as serious mental illness, the care falls primarily to the willing, but weary parents, or in some cases older siblings. The greatest fear and concern that many of these families have is what happens to their loved one when the parent's life ends.
Hundreds of thousands of aging parents provide years and even decades of ongoing caregiving for an adult child who has a severe and persistent brain illness, such as schizophrenia, bipolar disorder, or schizoaffective disorder. Many of those afflicted with a serious brain illness will always be sick and need care. It is a disconcerting theme among almost all mental illness/brain illness advocates who are also family members. It is the common thread through all the stories told and lamented by parents or in some cases, aging siblings - what will happen to their loved one when they die?
For many aging parents may need assistance with their care in their golden years... not quite so golden for those that carry this burden knowing full well that services and care for their adult children may cease altogether when they are gone. It is a painful and worrying consideration of who will continue to care for the afflicted loved one. The future has important consequences for the entire family. In the meantime, extraordinarily little support and education exist to assist parents as to what happens to their adult children when they die, and they are excruciatingly aware that the clock is ticking.
Parents may assume or hope that siblings or other family members will take on the responsibility of caring for a loved one with a brain illness after their death, but much planning must go into establishing legal rights, financial, and compassionate plans. Worry for aging parents later in life when their health may be declining is ever-present, and the stresses of coping with the challenges of having an adult child who needs care, while also dealing with their own age-related changes in health can be awful. But time does not standstill. Indeed, time is of the essence.
What happens when there are no siblings or if they are not willing? The question remains - how do aging parents develop a comprehensive plan for the continuing care of their adult child after their death? If they were not able to find services, housing, or caregiving to assist them in caring for their adult children due to lack of resources in their community or from the government - where are they to turn? It is only a matter of time, and the sand may be slipping away.
I understand this predicament on a very personal level in my own life. My brother has schizophrenia, anosognosia, (a lack of insight into his own brain illness) a TBI, and is blind with other physical disabilities due to many injuries. My mother is an 80-year-old widow, almost completely deaf, and too frail to continue to care for my brother for the last 13 years. She didn't want to stop caring for him - going to him every day while he attempted to live independently, but the situation had become impossible after the last time she arrived at his front door while he was out of control and delusional. He did not believe that she was his mother and threatened to kill her with an ax that he had by the front door due to his paranoia and psychosis.
Many people have questioned why my brother is not living with family. The incident with the ax - has a lot to do with that - and because his serious brain illness came after he was an adult - no one in our family has ever been able to get the legal right to change his circumstances in over three decades because of the laws regarding LPS conservatorship and the legal definition of “Gravely Disabled.” This is only one example of the experiences that our family as with others must endure when they love someone with a serious brain illness. Fires... knives... tasers... forks... bats... canes... walking sticks... fist punches... and threats - due to his psychotic episodes have become a normal part of our existence as we have tried to maintain an environment of care for him.
While a compliant, afflicted loved one may agree to live with family and mitigate their symptoms with medication - that most certainly is not always the case. And with each new sunrise, there is a chance that will be the day of an impending crisis that will change the family's ability to care for the individual. My brother who is 57 years old, digressed to an even further state of deterioration as he became homeless and has barely survived on the streets of our hometown.
The law is still an obstacle that is inescapable in our broken system. Before the age of 18, legal authority and rights are afforded to parents to make decisions and have input - including placement when necessary, but as an adult - those rights are non-existent unless guardianship or conservatorship has been established - whether probate or LPS. Even then, if that is possible, the legal authority under conservatorship must be renewed every year. The day to day supervision, responsibility, and care of that individual is often a burden that few beyond a parent is willing or able to take on.
Those left to do the caregiving may realize that they have to abandon their expectations, goals, or dreams - something that parents may be willing to do for their child, but others may weigh the altruistic love and duty of a parent against their vision of the future in a much different way. For parents or any family member, it still takes a deep degree of inner strength to care for an adult individual who cannot think or care for themselves. But many parents face those challenges every day - often alone - without the support of extended family - but almost always with grace and wisdom that others may admire, but rarely possess themselves. Always looking forward... trying to find answers. Tick tock...
My twin sister and I have tried to carry the responsibility of helping our brother, finding services, and advocating for him… but we are 6 years older than him and each has our own serious health problems. Fighting cancer and disability for years - and being a 63-year-old widow, has led me to wonder how much longer I will have to fight for the right to get him the care that he needs and will need in the future, especially without legal authority. If aging parents or siblings are well-off financially it may be somewhat easier, but the fact remains that an adult with a serious brain illness left with no one to make their life decisions - money alone will certainly not pave the road to continued care. The law is still an obstacle that is inescapable in our broken system. And time does fly.
The very nature of a mental illness or a serious brain illness is intimidating and is very often misunderstood by those that only know of older relatives they've heard of who suffered the colloquial "nervous breakdown" with little knowledge of what it takes to care for a person with 24/7 needs of supervision. The impact of what an aging parent may explain to those who will be left behind to care for that individual can be off-putting and enough for someone other than a parent or sibling to avoid volunteering or agreeing to place themselves in that role – ever.
The thought of what will become of their adult child can be agonizing to aging parents which results in turmoil compounded at the thought of their child's future left in someone else's hands who may not truly understand, or indeed love them unconditionally as the parent has. But they cannot escape the passage of time... tick tock.
This is the ultimate horror for parents who have an adult child with a serious brain disorder. The knowledge that though they have protected and cared for that loved one through all the seemingly impossible scenarios and struggles…will all be abandoned once they are gone. Who will pick up the gauntlet and how will they cope with the oft-times unbearable and incredibly horrendous consequences of the symptoms of a serious brain disorder? For most families like ours – the details of the daily unknowns are hard enough for outsiders to even believe, let alone cope with suddenly... and without the years of experience that we have gone through.
There still are not enough group homes, psychiatric facilities, other supervised living situations, or mental health services for the most seriously mentally ill or those with a serious brain disorder. Many more will become homeless or become estranged from their remaining loved ones. But they cannot escape the passage of time. No one can. Tick tock...
The strain can become too much for those left behind to cope -because when there is someone in the family with a serious brain illness - the whole family is sick and suffer the symptoms of that disease. It is not always that siblings or other family members do not care, but often that they have other dependents and family members that they must also protect. Aging parents may find it hard enough to face their mortality - they also may be overwhelmed trying to prepare for the care of their adult child, especially in the face of little resources and options. It is an unfortunate fact that some siblings may not want to get involved. Or may have children that they want to protect.
What if the remaining adult children are disabled or have medical conditions that prevent them from taking responsibility? Still, even those who want to help will most certainly be prevented by laws that exist to protect the civil liberties of the loved one with a serious brain Illness - above the need for protection and care.
We have a system that does not provide supervised housing, beds, care management, treatment, or services to those with the most serious of brain illnesses. The broken and fragmented system is regularly dismissed by society and lawmakers as not the responsibility of anyone other than family - yet binds their hands - then leaves hundreds of thousands of families in a position of knowing that when they die... their loved one will be lost to the streets or incarcerated due to a crisis.
Even knowing that we will have even more individuals with serious brain illness left to the streets and knowing that even if siblings were willing and able to take over care, the laws nor lawmakers still do not support those most severely ill - other than giving them the right to live in misery or die with their civil rights intact – something that the illest or those with anosognosia have no comprehension of anyway.
Is this humane?
Does it then become an issue of when “their” time runs out?